Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

I got the Moderna in mid Febr, and was hospitalized with CVST in April. Recently had another CT scan and the clot has not gotten smaller , after being on blood thinners for 6 months

@steeldove shared the following article that I thought may provide some information for members following this discussion.

Half of those with rare COVID-19 vaccine-induced thrombotic syndrome have CVST: https://www.healio.com/news/neurology/20211011/half-of-those-with-rare-covid19-vaccineinduced-thrombotic-syndrome-have-cvst

Hi! So glad to find these posts. I was diagnosed with CVST on Dec. 13, 2021. It truly took me by surprise! I was getting ready to go study at the library and all of a sudden my vision was challenged. I started seeing black and white lines moving like a heatwave with a great deal of distortion. Called the nurse and she told me to get to the nearest hospital. Took a Uber and they took me immediately. I am now on Pradaxa after being hospitalized and diagnosed with CVST after MRI and aggressive dose of Heparin, then Lovenox. Under the care of a neurologist. I go today for further blood test studies. My question to some of you is if you felt fatigued while on blood thinners or is this a symptom of CVST? I just don't feel myself. It was very helpful reading your posts. I am 59 years old and in seminary. A very active woman with no diabetes, high blood pressure, or heart disease. I am not obese and I stay active. No estrogen issues. They are still running tests to try to figure out the "why?" God bless you for this site.

Brockman1, what a shock. Thank goodness you got help right away. I'm hoping fellow members like @makingfriends @timw6 @moondusk @awa @kiwimn17 @kyglo @pattylynn can share their experiences with fatigue and CVST or blood thinners.

Brockman, how did the further blood studies go? Any updates?

It seems as though I am not susceptible to blood clots. Lupus work was negative. The hematologist thinks that it was due to a sinus infection that I had in November. Feels as if my body was protecting the brain and formed a clot to block the infection. I wonder has anyone heard of this before?

@brockman1

I'm sure you are relieved that the blood work came back negative. You sound like a very active and involved person. Are you feeling better now with the treatment you are getting?

How do you feel about the doctor's theory about the clot blocking infection to the brain?

If you are at all unsure or have any more symptoms, I would encourage you to get a second opinion at a major university medical school or facility like Mayo Clinic. These types of health centers are the very best to diagnose unusual disorders and they can often be done by a virtual appointment.

Will you post again and let me know how you are doing?

My 30 yr old daughter was diagnosed with CVST in April. The suspected contributor was estrogen birth control pills- no clotting disorder family history and neg on genetic tests. She has been discharged and recovering at home.

It has been a difficult time to say the least- any patient or caregiver out there I can connect with? Thank you- Sonya

Hello @sonya_nc. I am so sorry to hear of your daughter's diagnosis and can understand this being a difficult time for you both.

I was able to find an existing discussion on the topic of CVST so you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/cerebral-venous-sinus-thrombosis-cvst/?pg=6#chv4-comment-stream-header

I would like to bring in members such as @mvoss8626 @kiwimn17 @makingfriends @moondusk and @awalker88 to see if they may be able to provide you with some much needed support.

In the meantime, can you share how she has been doing and what some of the major concerns are that you hope to get support for in this community?

After being admitted to hospital with severe headache and after having a CT scan and then a Venogram I was diagnosed with CVST and put on blood thinners. After 4 days in hospital and the initial shock and trauma for my family I accepted it and the prognosis that with care and blood thinners all would be well. However 5 weeks later after an MRI a different radiologist has decided that it’s not CVST. So they have taken me off the blood thinners and want me to have a lumber puncture next week to look for increased cranial tension. Having been off the blood thinners now for 3 days the headaches have got worse and to make it all worse they stopped my HRT oestrogen patches so now I have started having hot sweats!! I’m so confused and not doing well and feel that I’m being messed about. Any advice?

This is my story and I hope it helps someone.
49 and Male diagnosed November 2022 with acute non-occlusive DVST in my left transfers/sigmoid sinus during an ER visit. This was the forth time I went to the ER for a "head ache" and thanks to the radiologist they found my primary cause of my pain. Finally I have the correct rabbit hole to look into. I'm recovering now but I am very scared too. I hope to re-post in a year from now.

I believe it started over a year ago. Working in construction, I was exposed to high levels of lead during a demolition/painting project on an 1800's old home. At the same time, I received my second Madera vaccination and had a bad headache for the week. I shrugged it off as I do much of my life pains. I'm not sure what exactly caused my thrombosis but the symptoms started there. I felt like I was having panic attacks in the mornings followed by cluster type head pain. Specifically the left side of my face would get hot/numb and headaches in my frontal lob. I felt sick to my stomach constantly. My regular Dr. tried to put me on Paxel. That was awful. I scheduled a neurologist appointment, but they were all 8 months or more booked up. So no help for a long time and then, he said it was cluster headaches and migraines. Sent me on my way. I knew my symptoms very well. I described pain that was spot on with ICP. The first ER visit showed MRI findings of idiopathic intracranial hypertension. Dr. said everyone with age has that. I had seen several physician assistants. No one knew what to say to me. The second and third ER visit was just meds for migraines and sent me home. I lost all hope in our Dr.s and caretakers. I thought I was going to die at any time.

My advise is to tell the hospital it's "more than a headache". I was stroking out and telling them nothing. Now I feel like I have cranial nerve damage and I'm miserable. I hope i didn't wait to long and end up with Post-Thrombotic Syndrome. That's what my stroke nurse said could be the case. I do not want to live this way forever and my wife has to watch me suffer. God help us all.